Monday 20 January 2014

On the move

For everyone who is fortunate enough to be able to move around independently, I would estimate that most take that for granted. Likewise, I would suggest that one of the key ideas people have about ageing is that immobility is likely to come hand in hand with getting older.

Along with wearing dentures, losing your driving licence, becoming incontinent and living with dementia, immobility is right up there in most people’s vision of what ‘being old’ is like. It’s a hugely stigmatised view of course, since many people live a very long life without encountering any of these problems. Indeed I once knew a lady in her 90’s who was still driving her little Mini around, was perfectly able to get to the toilet when she required it, still had all her own teeth, and most definitely didn’t have dementia.

Nevertheless, the image of the older person with their walking stick or zimmer frame looms large in most people’s vision of ageing and indeed of living with dementia. It is worth pointing out, however, that I’ve known many people who never really had mobility problems during their years with dementia, and only became confided to bed when they became ill with an infection that they died from shortly afterwards.

Supporting mobility is a key aspect of helping a person to live well with dementia. The exercise is good for their general health, the independence is good for their mind, and mobility ensures a sense of normality is retained when many other aspects of their life may be changing. That’s not to say that being mobile doesn’t present risks, particularly around the desire to walk a lot (as I wrote about here) and the potential for falls and accidents that can result in broken bones, cuts and bruises. All of these can take a longer to heal for an older person, and if a hip is seriously broken it can be a threat to someone’s life.

These risk factors often lead to worries about a person’s safety and security if their mobility is actively encouraged, but we shouldn’t become too risk adverse. Mobility is vital part of a person’s life that as families and professionals we should make sure we support. Keeping people seated or in bed simply to protect them from the potential for injury is likely to do a huge amount of harm to their physical and mental wellbeing, and even more so if restraints are used.

Seeing immobility as some kind of cosy cotton wool world is totally inaccurate. If someone becomes immobile it produces a whole range of added problems, most notably around pressure sores and increased risk of infections. My father had far more chest infections when he became immobile, and his GP was firmly of the belief that his lack of movement was contributing to his inability to effectively remove the secretions from his airways. Imagine being unwell with chest, bladder or stomach problems and unable to move – a fairly unpleasant thought for anyone to contemplate.

Maintaining an individual’s mobility when they are living with dementia does, however, produce challenges. If a person becomes unsteady on their feet and requires a walking aid, trying to support them to learn how to use that correctly can be very difficult. Keeping people mobile if they are beginning to struggle with independent mobility also requires a huge amount of commitment from professionals and/or family members.

In care settings, including hospitals, you need high staffing levels to ensure that there is enough support to help people to move around. Movement often takes time and patience and cannot be rushed. In almost every care setting there are never enough physiotherapists, occupational therapists and indeed supporting care staff who are ready, willing and able to help someone to walk down the corridor, go to the loo or indeed venture further.

Even if an individual does eventually become immobile, that doesn’t mean that they should be dumped in a room and left there all day, or excluded from events or activities simply because no one has time to give them the opportunity to move. One of the big problems in my dad’s care home was always the lack of wheelchairs; you would often have to beg and borrow in order to find a wheelchair for him to be moved from his room. It would be utterly unacceptable for someone to not have clean clothes or food in a care home, but apparently it’s perfectly acceptable to restrict their chance to move around just because they are unable to walk anymore.

Immobility has huge implications for a person’s quality of life. It can affect the opportunities they have for engagement, fun, new experiences and environments, and the pursuit of hobbies and interests. It is also likely to affect emotions, often producing frustration, anger or boredom. Indeed, whenever you feel someone who is immobile is producing ‘challenging behaviour’ ask yourself how you might feel in their circumstances. Some people can even lose the will to live through immobility.

For many years the Paralympic movement has shown us what people can do when they are restricted by mobility or movement (see my blog on the positive approach of Paralympians), yet we often see older people, people living in care homes and particularly people with dementia, assume immobility is a natural part of their life and simply give up on helping them to maintain their mobility. I’m not suggesting our older generations are likely to want to become Olympians (well you never know!), but they should be given every opportunity to keep moving, however much they can and for as long as they can. After all, wouldn’t you want the same chance afforded to you?

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886

Monday 6 January 2014

A rallying call!

For the start of 2013 I wrote 'My dementia wish list’. Arguably I could just re-blog that for the start of 2014, since everything I described in that post is just as relevant now as it was 12 months ago.

Does that mean 2013 was a failure in terms of achieving those aims? Some may argue yes, but I’m not na├»ve enough to believe that those 10 objectives can be met in just one year. In my mind they remain a benchmark against which we should all be judged, and I include myself in that.

So many people talk about the end of the Christmas holidays conveniently forgetting that for many people the last two weeks haven’t been a holiday. For family carers and many front-line health and social care staff, Christmas Day, New Year’s Day and the other 363 days of the year are interchangeable; the relentlessness of what these individuals do, combined with their dedication and selflessness is what keeps our most vulnerable people safe, well and happy. If we recognise nothing else in 2014 it should be that.

Sadly with existing budget cuts, and more in the pipeline for 2014, services are closing or being restructured in a way that often appears to bear little resemblance to what might benefit family carers and frontline staff. Granted I’m biased after my experiences with my father, but I do genuinely believe that there are some things a civilised society should hold sacred, and looking after its most vulnerable people, and those who are charged with caring for them, to the best of that society’s ability should be sacrosanct.

Of course if evolution makes it possible to do things better and spend less money in the process that is a win-win for all, but the shear logistical requirements of health and social care will always have a high price tag, and to only see that rather than the requirements of the people accessing desperately needed support is the mind-set of someone who has never needed help for themselves or a loved one.

That mind-set is also completely at odds with the experiences many readers of this blog have had. A glance at the top 5 most-read posts on D4Dementia offers a very interesting insight into the priorities my readers have:

5) End-of-life care: A very personal story

4) Hydrated and happy (Dehydration)

3) So how much do you know about dementia? (Awareness)

2) The voices of experience (Experts by experience)

1) Hard to swallow (Swallowing problems/dysphagia)

The social media activity around my blog has shown, time and time again, that the posts involving practical advice on how to cope with common experiences of caring for a person with dementia (as delivered by ‘Hard to swallow’ and ‘Hydrated and happy’) are as widely read by professionals as they are family carers - indeed perhaps even MORE widely read by professionals.

Likewise the need to understand what good end-of-life care looks like will affect us all at some point, and as much as it is a difficult and potentially even a taboo topic, people from all walks of life are driven to seek out that advice. Then, of course, there are posts 2 and 3 on my list that exist to remind everyone about the value of the lived experience, and the need for basic awareness delivered in a meaningful way from said experts by experience.

The popularity of these five posts alone, alongside a look at the search terms statistics that tell me what individuals are searching for when they find D4Dementia, proves just how much this information is needed and how interchangeable it is (IE: not confided solely to those who are caring for a person with dementia). It doesn’t take much more of a leap of faith to link that need for information with the real-world need for care and support.

Fast forward another 12 months and I suspect that at the start of 2015 this may have become an even more desperate situation for many people. What of course will be looming on the horizon by then will be the UK General Election, expected in May 2015. In order to ensure that the needs of the UK's most vulnerable people, and those who care for them be they family members or professionals, are not forgotten, 2014 will be a pivotal year to continue to highlight the difficulties that they are facing and push for the care, help and support that they need.

If I could give you a rallying call for 2014 it would probably read ‘Let’s be united and determined’. In my mind there is no greater challenge for the year ahead than to ensure that health and social care is given the priority anyone who has needed it, or worked in it, knows it deserves.

Until next time...
Beth x

You can follow me on Twitter: @bethyb1886